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What are my options? NHS say no treatment available.

(16 Posts)
DulliDulli Mon 18-Dec-17 18:14:12

I have a Bakers cyst behind my knee. It’s large ( 7 x 9 cm). It’s position means my knee is in constant pain and I can’t stand/walk for long. It’s been 2 years now and the cyst has burst twice which is excruciating. I have seen dr and then consultant who have both advised that the NHS no longer funds treatment for bakers cysts.

What can I do? Am I just supposed to live like this? So sorry to be dramatic but it’s really getting me down. I’d love to go private but I’m on a very low income.

QueenOfTheFlatPack Mon 18-Dec-17 18:48:04

This might sound mad but have you asked for a referral to physio? Bakers cysts are sometimes linked to arthritis or cartilage tears, both of which could be within a physio's expertise to help with. Also, I have found that if a problem actually is more serious, the physio will insist on a referral to sort it out, and of course they carry more weight than the mere patient wink

DulliDulli Mon 18-Dec-17 19:08:12

Queen, thank you.

No, I didn’t know you could just ask for physio or that it would even help - it certainly hasn’t been suggested. I’ve just been advised to take painkillers as needed and that they couldn’t do anything else.

QueenOfTheFlatPack Mon 18-Dec-17 19:35:25

I expect physio is a postcode lottery like everything else! We are lucky as we currently can self-refer to physio at our local (very large, very well-known) hospital. You go through a phone interview with a trained HCP and then usually get an appointment within about 6 weeks.

(If you live in north essex, cambs, west norfolk, North herts, DM me and I'll give you the number grin)

If you dont have this facility, it might be worth just taking different approach with GP and say you want to learn the best way of managing the pain. Specific exercise can be amazingly effective. I am skiing-fit now after 28 years of sporadic acute knee pain and no obvious cause for it -thanks to several rounds of physio over the past couple of years.

Blackteadrinker77 Mon 18-Dec-17 19:39:16

Walking really helps it.

If you can walk a bit further each day. A lower carbohydrate diet has been used in some studies but they are only in the first few years so no findings yet.

DulliDulli Mon 18-Dec-17 19:50:56

I’m in the NW unfortunately but thank you!

Black tea - if I spend any amount of time walking my lower leg swells considerably until visibly larger than my other leg. Which is then painful. Is there anything to read up about the low carb eating?

RestingGrinchFace Mon 18-Dec-17 19:54:34

Could you pay for private treatment? Most areas have at least basic private healthcare services.

DulliDulli Mon 18-Dec-17 19:59:19

I earn 10k a year Grinch - I just can’t afford it unfortunately.

pterobore Mon 18-Dec-17 20:03:51

Does your local NHS have an exceptional cases panel where they look at funding non rountine things on a case by case basis. It should be on your local CCG's website if they do.

DulliDulli Mon 18-Dec-17 20:08:08

That’s definitely something to look into, thank you pterobore.

HopelesslydevotedtoGu Mon 18-Dec-17 20:09:30

You can usually make an individual funding request to make a case for special funding for you
Your GP makes the application if they agree surgery may be warranted, then a panel at your CCG will assess your case.
I think they would be more likely to agree if you Make a strong case for yourself, by trying the treatments they have recommended eg painkillers and explaining why they aren't sufficient, and explain how it impacts on your health and ability to work and enjoy life. Eg if you want to lose weight but can't exercise.
There may be a public document in your ccg area setting out the normal criteria for this operation. You could look at your CCG website or email them.
One point is how likely is it that surgery will be successful and whether the problem is likely to recur after surgery. I don't know the answer to that for Baker's cyst, but some treatments are limited for these reasons.

Katescurios Mon 18-Dec-17 20:10:14

Do you have access to an employee assistance programme? I know ours do free counselling so they may help with physical help too?

GlitterGlue Mon 18-Dec-17 21:00:47

I would look at the NICE guidelines before seeing your gp again. cks.nice.org.uk/bakers-cyst#!scenario

Is it the gp who is saying no treatment, or a consultant?

DulliDulli Mon 18-Dec-17 21:17:18

Hi Glitter, they are both saying the same - that they used to drain bakers cysts as a standard treatment but they no longer find this treatment due to cysts often coming back.

Dowser Mon 18-Dec-17 21:26:43

Can’t believe in our country someone is sent away in pain when relief could be at hand
I’d be getting my mp involved
Theyworkforyou.com

Katescurios Mon 18-Dec-17 22:35:17

Just looked at NHS site and it says generally no treatment too www.nhs.uk/conditions/bakers-cyst/treatment/

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